I’m not quite sure where to start with this one, but I think it’s important so I’ll give it my best shot.
When you get sick, you assume there’s a herb or medicine that can ease the discomfort while your bodies recovers with some additional rest. If that fails, you still don’t worry because there’s a doctor available who will surely know what to do. If they don’t, then still restrain yourself from panicking, because they know the right department that can help you.
And then there’s me, and others like me. The ones that don’t make it into the leaflets or the bus stop ads with smiling faces. The ones who no one will take responsibility for, the ones who are let down time and time again, who get gaslit or their health concerns dismissed. The ones who one department will say you’re too sick for us to help and another who will say you’re not sick enough. And I’m not just talking about healthcare services here, government services as well.
My neurologist has repeatedly told me I’m fine, that I walk fine, that nothings wrong. But that also this is just a simple case of “these things happen” and it’s my body’s “natural response to pain”. Then, when I push for help from my neurosurgeon and he sends me to someone who does diagnose a genuine neurological condition, my neurologist writes “I feel I have reached the end of the road with Chloe”. The very short road of laughing at me during appointments, trying to tell me nothings wrong as if I’m supposed to just jump out of my chair and skip down the hall back to my old life. And not forgetting reporting I’m getting on successfully with medication I haven’t taken in 3 years and that I arrived in my wheelchair when I made damn sure I walked in so she couldn’t tell me I had a “normal gait” again.
Then there’s the GPs themselves. The one who told me that I’d just have to “get on with it”. This was in response to the wrong CT scan being ordered by another GP, I requested for the error to be fixed which was denied, and when I asked what the hell I was supposed to do with my failing health if they can’t order the right scan that might identify why the fuck I can’t walk like a normal person. Get on with it.
Or the GP who writes “patient came in with a walking stick?” Because the patient is disabled. “Patient discussed her post covid fatigue” Ignoring the fact the patient has a diagnosis of Chronic Fatigue syndrome. “Patient was a little tearful.” That was the clinical observation written when I called in May begging for help because I didn’t want to be here and was planning how to make that happen – in case you’re wondering, I was told that if I needed support I should call Samaritans.
I fought hard for a physio referral, I’ve had to do my own rehabilitation where it’s been denied to me. The first physio said I needed more specialised help, the specialised help said she couldn’t help me, but had a considered a commode downstairs? Not so much as an exercise sheet. For those that don’t know, I didn’t just lose the ability to walk properly, or sometimes at all, I lost all fine motor skills. Even now I struggle to cut up my food when it’s hard, like roast potatoes for instance. I couldn’t even write, but no one would help so I spent months sat in my room doing handwriting sheets, eating with chopsticks, using baoding balls and trying to knit. Even now I struggle to write a birthday card, but at least it’s legible now.
Only this year, thanks to a lovely continence nurse, I got some things installed at home to make me safer. They then did a referral to Adult Social Services because they felt I needed more than they could provide. I’d previously tried to refer myself to social services when I had bedsores that no one would help me with, they said that because I was still under neurology, it meant I hadn’t been signed off as not getting better so they couldn’t help. With fucking bedsores. So I felt hope when the OTs did the referral, but after two assessments, the answer was that because I wasn’t permanently in my wheelchair they couldn’t provide help. Always something, right?
Don’t get me started on what happened at Southmead after my surgery either, these are just the highlights that I can recall whilst writing this.
This isn’t just one failure, not just one case of slipping through the cracks. This is what I’ve been quietly fighting against for four years. A system that doesn’t want to help me, several in fact. I fight so fucking hard to get through the right door, and I’m either too sick or not sick enough. Or what I tell them doesn’t match what the last fuck wit wrote on my medical records.
In fact the only person I’ve seen that accurately records things and does what he says he will has been my Neurosurgeon. A man of few words, but they carry weight and he has no problem writing that my issues were caused or exacerbated following the Pfizer vaccine. But shouldn’t accurate records and actually helping your patient be the norm? Shouldn’t it be maximum one person that is negligent, not all but one? And I’ve seen a bloody lot of them.
Then there’s the withdrawals that no one with help me with. No support, no guidance, no matter how bad it’s impacting my mental health. Please note I haven’t even discussed the financial burden of all this either, which is significant.
All this resulted in me going to A&E this weekend and asking to be sectioned for my own safety. The reality is that my health is getting worse, sure some things have improved, but then the rest has gotten worse. And I realised I don’t know what I’m fighting for anymore. My present life is fucking awful, and with no one supporting me or trying to help me better my health, I’ll only keep getting worse. Because what the hell do I know about curing neurological conditions and various other conditions, diseases and syndromes?
So why am I fighting for a future that quite frankly I don’t like the look of? It’s certainly not the future I planned for myself, it’s not even a half life. So I reached a point of giving up and I had an emergency therapy session and was told I needed to present at A&E, that should get me some help, or at least keep me safe.
I’ve spent over 4 years fighting on my own to get through to the right door, only for it to be shut in my face time and time again. I don’t mean on my own in a sense that I haven’t had friends and family behind me the whole time, but in the sense that not one fucking doctor has been fighting with me or for me. No one seems to think that a very fit, athletic and intelligent 27 year old, who’s suddenly unable to work, socialise, exercise, do basic math or even write a fucking birthday card, is something to be concerned about.
I spent a lot of my life feeling invisible and it’s like those feelings that I worked really hard to erase in therapy are all being validated. I feel inadequate as a human being. I can’t make my own dinner, I can’t always bath myself, sometimes I can’t even brush my teeth without being sat down and supporting my arm on something. I have to decide whether to walk Riley or have lunch, or whether I can bath and see a friend in one day. But if I have an appointment, I have to keep nearly a week clear both to have the energy for it and to recover after.
I miss my life. The one where I could run down the stairs in time to get a delivery before they fuck off, or run errands on the way home from a long day at work, one where I’d walked with the dog before work and spent my lunch break squatting 120kg or bench pressing 70kg – both for reps. And then in the evening I’d head out for a few beers and a game of pool after cooking myself some dinner. I’d sleep a most peaceful and contented sleep, ready to repeat the same again tomorrow. I finally had my shit together after years of pretending to be someone else, to fit in with people I didn’t actually like, and then it all fell to shit in the space of two hours.
How can it be fair? Not just that this happened, because I think I’m far from the worst person in this world, but that even after it’s happened there isn’t anyone to help me fix it? Because I’m not terminal, no one has said I can’t get better, in fact they’ve said the opposite. But they still won’t help me achieve that.
This is quite long, so if you’ve made it this far I don’t know whether to congratulate you or send my condolences. But I’ve alluded repeatedly to how hard this journey is, I’ve spoken about how frightening my thoughts can be at times. But I don’t think I’ve ever actually sat down and written why I’m still sick, why I don’t want to keep fighting for a future that is more miserable and bleak than my current existence or just how many errors happen for me and others like me. And the sheer negligence of it all.
I’m fucking exhausted and it’s not just from the CFS. But I had to find the energy, both mental and physical, to write down just what a shitshow this journey has been and still is. I don’t know what I hope to achieve by writing this, but it felt good to write it, even if nothing ever comes of it.